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Epilepsy self-help groups: collaboration with professionals.

L D Borman, F L Pasquale, J Davies

    Prevention in Human Services
    |January 6, 1983
    PubMed
    Summary
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    Professional and self-help groups collaborated to advance epilepsy knowledge and develop national support networks. This involved a demonstration project and an action learning workshop, empowering individuals with epilepsy in decision-making.

    Area of Science:

    • Social Sciences
    • Public Health
    • Community Psychology

    Background:

    • Professional and self-help organizations often operate independently, potentially limiting the reach and impact of support initiatives.
    • Developing effective self-help resources requires understanding the unique needs and experiences of individuals within specific health communities, such as those with epilepsy.
    • Collaboration models between professionals and mutual aid groups are crucial for enhancing knowledge dissemination and support network development.

    Purpose of the Study:

    • To describe two sequential cases of professional-self-help/mutual aid collaboration in the context of epilepsy support.
    • To evaluate a federally funded demonstration project aimed at establishing epilepsy self-help groups across multiple cities.
    • To assess the impact of an action learning workshop that integrated research with extension work for advancing epilepsy self-help knowledge and networks.

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    Main Methods:

    • Implementation of a federally funded demonstration project involving the development of epilepsy self-help groups in 15 cities.
    • Utilized a "mixed strategy" approach, fostering national and local collaboration with decision-making power vested in individuals with epilepsy.
    • Conducted an "action learning workshop" combining research methodologies with extension work to advance knowledge and build a national network.

    Main Results:

    • Successfully established epilepsy self-help groups in 15 cities through a collaborative, mixed-strategy approach.
    • The action learning workshop facilitated the advancement of knowledge regarding self-help group development and the experiences of persons with epilepsy.
    • A national network and alliance of epilepsy self-help groups was successfully developed, strengthening community support and advocacy.

    Conclusions:

    • Professional-self-help/mutual aid collaboration is an effective model for developing and sustaining community-based support groups.
    • Empowering individuals with epilepsy in decision-making processes is key to successful self-help group development.
    • Integrated research and extension approaches, like the action learning workshop, can accelerate knowledge advancement and network building in health advocacy.